PACIFIC REGIONAL COMPREHENSIVE CANCER CONTROL PLAN 2012‐2017

(1)

U.S. Affiliated Pacific Island Nations

American Samoa – CNMI – Guam – Palau – RMI ‐ FSM

PACIFIC REGIONAL

COMPREHENSIVE CANCER CONTROL PLAN

2012‐2017

Revised October 9, 2014

(2)

FORWARD MESSAGE

Talofa, Hafa Adai, Tirow, Iakwe, Alii, Ran Annim, Len Wo, Kaselehlia, Mogethin, Hello!

On behalf of the Cancer Council of the Pacific Islands (CCPI) and the Pacific Comprehensive Cancer Control Coalition, we are pleased to present the updated the Pacific Regional Comprehensive Cancer Control (RCCC) Plan for 2012‐2017.

Cancer places a particularly heavy burden on our individual small countries and states; chronic disease places an even bigger burden, such that the Pacific Islands Health Officer Association (PIHOA) declared a Regional State of Emergency due to Non‐Communicable Diseases (NCD) on May 25, 2010. Our populations and absolute numbers of cancer are relatively small compared to the United States, but because of the many challenges that exist in our jurisdictions’ economic and health care infrastructure, the burden is high. Given the high rates of obesity in children and adults and tobacco use among youth, we anticipate that the NCD and cancer burden will increase drastically while our health systems remain inadequately prepared to address this NCD burden.

Awareness and advocacy about cancer‐related issues was brought to U.S. Affiliated Pacific Island (USAPI) Regional and U.S. National attention starting in the mid‐1990s. After several years of advocacy by dedicated physicians and public health leaders in the USAPI and Hawaii, the Pacific Cancer Initiative was started in 2002. With funding from the NCI National Center to Reduce Cancer Health Disparities and the NIH National Center on Minority Health and Health Disparities, assistance from Papa Ola Lokahi and ‘Imi Hale (who held an NCI Special Populations Network grant) and under the leadership of Dr. Neal Palafox, an indigenous advisory council was formed, The Cancer Council of the Pacific Islands (CCPI). Together with the University of Hawaii Department of Family Medicine and Community Health, also under the direction of Dr. Neal Palafox, Cancer Needs Assessments were performed in 2002. From there, preliminary regional and jurisdiction‐specific priorities were formed. In 2004, the University of Hawaii, designated as the bona fide agent for 5 of 6 USAPI, received a National Comprehensive Cancer Control Planning grant; Palau received their own NCCCP grant. In 2005, a feasibility study for a regional cancer registry was conducted. In 2007, the CCPI developed the first RCCC plan, designed as an adjunct to each jurisdictions’ NCCCP implementation funding. As part of the RCCC plan, in 2011 a region‐wide assessment on cervical cancer prevention (immunization, screening) was conducted to evaluate and improve cervical cancer control efforts throughout the region.

The original Pacific Regional CCC Plan was developed in conjunction with the individual CCC plans for the three Flag Territories, and the three Freely Associated States (FAS). The Flag Territories are American Samoa, Guam and the Commonwealth of the Northern Mariana Islands (CNMI). The Freely Associated States include the Republic of the Marshall Islands (RMI), and the Republic of Belau (also known as Palau) and the Federated States of Micronesia (FSM) which consists of Yap,

(3)

Pohnpei, Kosrae, and Chuuk States. Each of these jurisdictions has developed their own CCC plan – 9 in total – to address their specific needs. With the increase NCD burden and emphasis on collaboration with other NCD programs, the 2012‐2017 RCCC Plan was updated and developed with several regional NCD partners and initiatives (tobacco, diabetes, regional surveillance, quality assurance) and includes collaborative objectives and strategies in several goal areas.

The Pacific Regional Cancer plan speaks to maintaining a U.S. Affiliated Pacific regional format for discussing and addressing cancer. The Pacific Regional Cancer Plan is a long‐term plan, designed to be coordinated in conjunction with Pacific Islands Health Officers Association (PIHOA) efforts in improving public health infrastructure and policies within the USAPI. The Regional efforts support jurisdiction efforts by leveraging resources, conducting assessments and training, providing technical assistance and some degree of uniformity in addressing cross‐cutting issues that impact the resource‐limited USAPI countries and jurisdictions.

The 2012‐2017 Plan aims to work collaboratively to support coordinated local efforts in health promotion messaging, education, support of evidence‐based policies in cancer prevention, cancer screening, palliation and patient navigation programs for the U.S. Affiliated Pacific, develop regional policies regarding utilization of cancer data, provide regional technical support for all parts of the comprehensive cancer plan, and expands regional Cancer advocacy at the U.S. National level.

Coordinated assessments will also be conducted over the next five years to determine the feasibility of increasing in‐region capacity to treat common cancers. While not explicitly stated in the plan, the Regional cancer programs and partners continue to work with PIHOA and the Regional lab to improve the capacity for in‐region chronic disease testing and diagnostic capacity. In addition to the jurisdiction‐specific and Regional CCC projects, there is a CDC National Program of Cancer Registries (NPCR)‐funded Pacific Regional Central Cancer Registry (PRCCR), which has established a cancer registry in each jurisdiction and the region. Over time, as health information systems and data quality improves, the Registry data will allow for more robust analysis of cancer risk factors (in cancer patients), co‐morbidities, long‐term efficacy of screening and immunization programs (Hepatitis B and Human Papilloma Virus), mortality and survivorship data. The PRCCR is linked with CDC‐funded Breast and Cervical Cancer Early Detection Programs in Guam, CNMI, American Samoa and Palau, and with cervical cancer screening programs in the FSM and RMI. Cancer registrars in each jurisdiction are integral parts of their CCC programs. PRCCR will continue to participate with PIHOA and other partners to improve data quality and mortality reporting.

A Regional approach to Comprehensive Cancer Control has borne some successes in cancer registration, palliative care curriculum, cervical cancer screening, community‐CCC program partnerships and assessing the impact of community‐driven projects and programs on controlling cancer along the continuum. However, many barriers and challenges remain. We are thankful to the Centers for Disease Control and Prevention for supporting our effort and also thankful to the many other U.S. CCC National Partners who have contributed resources and talent to the overall Pacific Cancer Initiative and Pacific Cancer Coalition. Newer international partners (Secretariat of the

(4)

Pacific Communities, World Health Organization, Pacific Monitoring Alliance for NCD Action) continue to be invaluable in assisting all of U.S. in addressing the NCD issue in a more coordinated fashion. The largest credit goes to the people of each USAPI jurisdiction who have come together over the past ten years, struggled and worked hard to create community‐driven CCC plans that incorporate each location’s community strengths, structure and culture. Through this CCC process, there is renewed interest in communication and collaboration among the many sectors and partners that can impact individual and population health. Through this CCC process, momentum is gaining, support is broadening and we have developed plans that serve to guide present and future leadership for our jurisdictions and the Region.

We thank you for your interest in the U.S. Affiliated Pacific Island jurisdictions and welcome your support and collaboration in helping U.S. on our journey toward our “A Cancer‐Free Pacific”.

Dr. John Ray Taitano Va’atausili Tofaeono

Internal Medicine Physician Comprehensive Cancer Control Program Manager

Guam American Samoa

President Vice‐President

Cancer Council of the Pacific Islands Cancer Council of the Pacific Islands

For additional information, please contact the:

Pacific Comprehensive Cancer Control Program Department of Family Medicine

John A. Burns School of Medicine University of Hawaii – Manoa 677 Ala Moana Blvd, Suite 815 Honolulu, HI, USA 96813

Pacificcompcancer@gmail.com Phone: 1.808.692.0854 Facsimile: 1.808.586.3099

Work on the PRCCC plan was supported in part by:

Centers for Disease Control and Prevention

Natl Comprehensive Cancer Control Program (DCPC NCCCP), implementation grants to each PIJ

National Program of Cancer Registries (DCPC NPCR),

University of Hawaii DP07‐703 000835 & DP12‐1205 0003906 Pacific Center of Excellence in the Elimination of Disparities (DACH REACH U.S.), University of Hawaii DP07‐707 000976

The content of these plans are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.

(5)

USAPI Regional Vision: A cancer‐free Pacific

Overview

The U.S.‐Associated Pacific Islands (USAPI) consists of three Flag Territories, and three Freely Associated States (FAS). The Flag Territories are American Samoa, Guam and the Commonwealth of the Northern Mariana Islands (CNMI). The Freely Associated States include the Federated States of Micronesia (FSM) which consists of Yap, Pohnpei, Kosrae, Chuuk; the Republic of the Marshall Islands (RMI), and the Republic of Belau (also known as Palau) (ROB). The population of the USAPI is approximately 445,000 people with 176,000 of the inhabitants living in the FAS. The expanse of the USAPI is twice the size of the continental United States and crosses 5 time zones and the International Date Line.

American Samoa has been a territory of the United States since 1900 and Guam was annexed as possession of the United States in 1898. In 1947, under a United Nations Mandate, the United States took responsibility for the health education and welfare of the U.S. Trust Territories of the Pacific Islands (TTPI) which included what are now the FAS and the CNMI. The FAS countries are full members of the United Nations and are sovereign except for military matters. They share a treaty with the U.S. Government under separate Compacts of Free Association that qualify them to participate in specified Federal programs including U.S. Health and Education programs.

As former colonies of the United States, the USAPI have become heavily dependent on U.S.

assistance. The current political relationship of the USAPI to the U.S. Government defines the level

(7)

of political, economic, and grant support from the U.S. The citizens of the Flag Territories are classified as U.S. citizens, however they cannot vote in U.S. presidential elections. FAS citizens are classified as non‐immigrants, cannot vote in U.S. elections, but can freely immigrate to the U.S. to work without a VISA. Guam and American Samoa have non‐voting representatives to the U.S.

Congress. The CNMI has a representative in Washington DC who is not a Congressional member.

The FAS have no representatives in Washington. The citizens of the Flag Territories qualify for Medicare, Medicaid benefits, and all U.S. Federal Grants. The citizens of the FAS do not qualify for Medicare or Medicaid, and can access those U.S. Federal Grants where legislation about that grant defines their eligibility.

Each of the USAPI has unique cultures, histories and languages. The economic, health and political development of each jurisdiction of the USAPI are related but not similar. There are significant health disparities between the U.S. and the Flag territories and appalling health and education disparities between the U.S. and the FAS. The HRSA funded Institute of Medicine (IOM) report in 1998 entitled “Pacific Partnerships for Health”, explained that the life expectancies among FAS countries is 9‐12 years less than the U.S., and that infant mortality rates are 4‐6 times that of the U.S.. UNICEF has designated 5 countries in the Pacific which need special attention because of malnutritionⁱ‐‐ two of these countries are in the FAS. Tuberculosis and Hansen’s disease are endemic in parts of the FSM and the RMI.

(8)

Figure 1 USAPI Per Capita Total Expenditure on Health

The ability of each jurisdiction to respond to meet the health needs of the region is dependent on the health infrastructure, financial resources, and the quanta and level of training of the health work force. The health care budgets expressed as a per capita expenditure of the jurisdiction is far below that of the U.S., ranging from $100 to $1,032ⁱⁱ in comparison with $8,233 spent in the U.S. in 2009. Expensive tertiary care is purchased from Hawaii or the Philippines for advanced cases of cancer, heart or kidney disease through medical referrals. Nearly 1/4 of the already inadequate health budgets are expended on tertiary care abroad. The 1998 IOM Reports described the grossly inadequate health facilities in most of the USAPI. The amended U.S. Compact of Free Association funding is austere and does not significantly improve health care financing for the FSM and RMI, and in fact in some health areas it will be reducedⁱⁱⁱ. The health services in the FSM and RMI already feel the impact of the decremental Compact payments^iv. In September 2008, the U.S. Department of the Interior’s Office of the Inspector General issued a report entitled “Insular Area Health Care:

At the Crossroads of a Total Breakdown”^v, which further describes some of the challenges currently faced in the USAPI.

(9)

The reasons for the present health status and health infrastructure in the USAPI are protean.

Factors influencing policy issues, political relationships, economy, environment, culture, health system, education and human resource development all play a role. Rapid Westernization has affected the human and environmental island ecology and the traditional and cultural practices which previously maintained good health status. The epidemiologic transition, the name given to the change of morbidity and mortality patterns from infectious disease to chronic illnesses as less industrialized nations adopt Western dietary and lifestyle patterns, has brought a double burden of infectious and chronic illnesses to the Western Pacific.

The NCD morbidity and mortality rates in the USAPI are indeed among the highest in the world. The prevalence of diabetes among 25‐64 year‐old adults was 47.3% in American Samoa, 32.1% in Federated States of Micronesia (Pohnpei) and 28.3% in Marshall Islands. The prevalence of hypertension was 34.2% in American Samoa, 21.2% in Federated States of Micronesia (Pohnpei) and 15.9% in Marshall Islands. The obesity rates (BMI≥30kg/m) were 74.6% in American Samoa, 44.8% in Marshall Islands and 42.6% in Federated States of Micronesia (Pohnpei). Risk factors for developing cancer and NCD are also quite high:

 Daily tobacco use: 29.9% in American Samoa, 25.5% in Federated States of Micronesia (Pohnpei), and 20.8% in Marshall Islands. In the Pohnpei FSM, 26.9% of the total population chew betelnut daily.

 The number of families that consume less than the recommended five combined serves of fruit and vegetables: 91.1% in Marshall Islands, 86.7% in American Samoa and 81.8% in the FSM (Pohnpei)

 High prevalence of sedentary lifestyles: 64.3% engaging in low Physical Activity in the FSM (Pohnpei), 62.2% in American Samoa and 50% in Marshall Islands

 Binge drinking (i.e., consumed 5 or more standard drinks per drinking day for men, and consumed 4 or more standard drinks per drinking day for women): 49.6% of men and 33.9% of women in American Samoa, 43.6% of men and 34.6% of women in Marshall Islands, and 35.1%

for men and 22.0% for women in the FSM (Pohnpei)^vi,^vii.

One of the key indicators of the immense impact of the Western dietary and lifestyle patterns is the prevalence of lifestyle behavior related cancers in the USAPI. Cancer mortality now ranks as the second or third most common cause of death in nearly all USAPI jurisdictions. There are very high rates of thyroid cancers and nodules in the RMI^viii,^ix, many attributable to the U.S. Pacific Nuclear Weapons testing program in the 1950s. Lung and oral cancer rank highly in all countries. Potentially curable cancers such as cervical and breast cancers are often found in far advanced stages. The availability of supplies or money to ship and process pap smears varies tremendously; in the FSM, less than 10% of eligible women receive pap smears; in the outer atolls of the RMI, no screening services are available at all. There is no mammogram in one urban area of the RMI, Ebeye as well as in the FSM. A working colposcope for diagnosis and early treatment of cervical cancer is non‐

existent in several areas of the FAS. The availability of fecal occult blood testing, colonoscopy or

(10)

prostate‐specific antigen varies. The FSM has no pathologist or radiologist and most countries do not have an oncologist. Some areas are able to perform limited maintenance chemotherapy when the patients return from the Philippines, but lack the proper equipment and training in the pharmacy. Medications for palliation are often in short supply and health personnel require more training in this area. In 2005, no support groups, hospice, home health or patient navigators existed in ANY jurisdiction. In 2012, most jurisdictions have at least one cancer survivor support group and budding support systems and personnel to help guide patients through the cancer journey.

Traditional medicine and healing practices are used in most of the jurisdictions, but not well incorporated into the developing palliative care programs. Traditional leadership continues alongside modern democracy in the RMI and FSM. Religion and spirituality play important roles in the lives of the people. Even if proper funds and facilities were made available for the region, the strength in the fight against cancer comes by acting as a community to provide education on prevention, early detection, and palliative care and to drive policy decisions and systems improvement.

Table 1 Selected indicators, programs and services impacting CCC efforts in the USAPI

(11)

For more information on Cancer in the USAPI, please visit our website: http://pacificcancer.org, where the ‘Cancer in the US Affiliated Pacific Islands 2007 – 2011’ document is available for download.

Individual jurisdictions cannot address their cancer burden alone. Because of the size of the population, limited health workforce, relatively small numbers of cancer cases and the economics of the region, this regional CCC plan has been developed and refined.

HISTORY OF CANCER CONTROL INITIATIVES IN THE U.S. ASSOCIATED PACIFIC Since the mid 1990s, physicians from the Pacific Basin Medical Association (PBMA) began raising concern for the increasing numbers of patients dying from cancer. At the same time, the Pacific Islands Health Officers Association (PIHOA) was developing a strategic plan which included focus on chronic diseases. PIHOA is the regional health policy body for the USAPIN, an organization comprised of the chief executive health official in each of the six USAPIN, the Directors of Health of the FSM States, the CEOs of Guam Memorial Hospital and LBJ Tropical Medical Center in American Samoa. In 1999, the President’s Cancer Council was presented with testimony on the cancer health disparities in the USAPIN. Dr. Freeman, the Chair of the Council, encouraged development of databases to strengthen the case for true cancer disparities. In February 2001, both PBMA and PIHOA made cancer a priority and these issues were discussed in many venues at the U.S. Federal level. In 2002, the NCI Center to Reduce Cancer Health Disparities, under the direction of Dr. Harold

(12)

Papa Ola Lokahi

Pacific Cancer Coalition

PIHOA (Advisory) Department of

Family Medicine and Community

Health

Community Group Leaders / Individual jurisdiction Coalitions ^Registry^working

CCPI

(Core Development

Pacific Cancer Coalition, 2004-6

Freeman, and the NIH National Center on Minority Health Disparities provided financial resources in response to Pacific advocates requests. Funding was channeled through Papa Ola Lokahi, a Native Hawaiian Health Organization with a long track record of providing advocacy and technical assistance to the Pacific. Dr. Neal Palafox, of the University of Hawaii Department of Family Medicine and Community Health served as the Principal Investigator for this project (2002‐2008).

These combined NCI and NIH resources were used to form the Pacific Cancer Initiative^x. The goal of the Pacific Cancer Initiative was to address the cancer health needs in the USAPIN by:

(a) Creating a regional cancer leadership team of Pacific Islanders;

(b) Assessing and articulating the cancer health needs of the USAPI; and

(c) Developing sustainable strategies to address the cancer burden in the USAPI.

Family Medicine residents and faculty physicians from the University of Hawaii Department of Family Medicine and Community Health and Dr. Henry Ichiho performed the Cancer Needs Assessments in 2002‐03. The assessment teams met with key informants in the curative and preventive services to compile cancer‐related data from death certificates, hospital records and off‐

island referral databases. In addition, the teams also asked key informants to assess the gaps in existing programs and services for cancer. The assessments were coordinated, reviewed and analyzed by the CCPI, presented for approval and verification of accuracy to the respective USAPIN health departments and published in a special issue of the Pacific Health Dialog on Cancer in the Pacific^xi. From there, preliminary regional and jurisdiction‐specific priorities were formed. Health promotion projects were developed as first steps, utilizing the NCI and NIH funding. In 2004, the University of Hawaii, designated as the bona fide agent for 5 of 6 USAPIN, received a National Comprehensive Cancer Control Planning grant; Palau received their own NCCCP grant.

EVOLUTION OF THE REGIONAL COMPREHENSIVE CANCER CONTROL PLAN

The regional planning has been led by the Cancer Council of the Pacific Islands (CCPI), the first group of its kind dedicated to developing regional collaboration, appropriate strategies and recommending minimum regional standards for cancer control. The CCPI development was funded under the Pacific Cancer Initiative in 2002. The CCPI Board Members were designated by their respective Minister, Secretary or Director of Health. The CCPI is comprised of two representatives from health services for each jurisdiction (including the individual FSM States and representatives from Ebeye in the RMI). Most of the CCPI members are physicians or nurse leaders with a few health administrators. Jurisdiction and regional priorities were

(13)

initially set as a result of the 2002‐03 Cancer Assessments, but the priorities were largely focused on the medical model. With the advent of NCCCP funding to the University of Hawaii in June 2004, formal community‐based coalition development started.

Each individual jurisdiction (American Samoa, Guam, CNMI, RMI, Palau, FSM National, Kosrae State, Pohnpei State, Chuuk State and Yap State) has developed a comprehensive cancer control plan to address their unique situation. NCCCP funding has provided full‐ or partial‐salary support for a Comprehensive Cancer Control coordinator, as well as meeting logistics and travel for jurisdiction community meetings, as well as travel for the Coordinators to attend CDC Cancer‐related meetings and other training. With the help of the CDC and the U.S. National Cancer Partnership, a Pacific‐tailored and focused Comprehensive Cancer Control Leadership Institute was held in Honolulu in March 2005, which initiated much of the CCC activities. Additional technical assistance in CCC planning, writing of the plans and implementation grants has been provided by the University of Hawaii Pacific Regional Comprehensive Cancer Control Program staff and others. Coalition‐building has been challenging in many locations not only because it is a very Western model with some conflicts with cultural expectations, but also because of the usual “vertical” and non‐integrated nature of Federal programs which have been the sustaining force for many of the public health programs in the USAPIN. Despite the diverse needs and infrastructure for each of the USAPIN, there remain issues and goals common to the region that make most sense to address in a coordinated fashion and in close conjunction with policy makers and partners with the region. For this reason, the Pacific Cancer Coalition developed the USAPIN Regional Comprehensive Cancer Control Plan. The Pacific Cancer Coalition is comprised of all 10 jurisdiction coalitions.

The original Regional plan was developed over 3 years, with the CCPI taking the leadership and proposing goals and objectives based on the regional priorities set in August 2003. November 2005 marked the first Regional CCC meeting in Pohnpei, with 2‐4 participants from each jurisdiction including the CCC Coordinator, a Coalition member and at least 1 CCPI representative. At that time, priorities were discussed. Also discussed were results of an assessment to determine the capacity for a regional central cancer registry in the USAPIN^xii. Regional goals agreed upon at the November 2005 meeting focused on sustaining a regional infrastructure for cancer control efforts, developing regional laboratory services, regional referral centers for basic cancer care and a regional cancer registry. At the July 2006 CCPI meeting, possible short‐ and long‐term objectives and strategies were discussed and further refined.

The proposed objectives were discussed with the PIHOA Board in August 2006 and some specific strategies were proposed by PIHOA to be done in close collaboration with PIHOA priorities. In November 2006 the Pacific Cancer Coalition reviewed and refined a detailed 5‐year workplan, agreed on the management, implementation and evaluation plans and agreed on a set of minimum recommended Regional indicators for cancer prevention, screening and data quality. As part of the annual Plan review process and to better align with PIHOA’s timeframe and plans for certain initiatives in health workforce development, the CCPI continued to refine the plan in 2008‐2010.

The 2012‐2017 Regional CCC plan is more explicitly collaborative with other regional NCD programs in all goal areas and will augment the jurisdictions’ long‐term capacity for surveillance, treatment,

(14)

survivorship and evaluation. The CCPI and CCC coordinators began the process of plan update in 2010 by utilizing workgroups and going through a facilitated, iterative process to determine priority barriers and needs and proposed solutions. In 2011, the CCPI invited leaders and representatives from other Pacific regional coalitions and programs to assist in the revision of the CCC Plan. These leaders included the Pacific Partnership for Tobacco Free Islands, Pacific Chronic Disease Council, Pacific Basin Medical Association, Pacific Islands Primary Care Association, as well as members of the PIHOA HIS SWAT team working to address health information systems and data challenges in the USAPI. At the November 2011 PIHOA meeting http://pihoa.org/news/conference.php, additional contacts and requests were made of regional nursing, lab, pharmacy and education, to name a few. More detail of the collaborative strategies can be found in the Appendix to this plan.

CANCER BURDEN IN THE U.S. ASSOCIATED PACIFIC ISLAND NATIONS

Historically, the USAPIN has been challenged with developing relevant and accurate health information systems since before the Trust Territories management in the 1960s. The technology, resources and complexity have been difficult to maintain^xiii, especially when superimposed on inadequately trained

(15)

health workers. There were no cancer registries in the USAPIN until 1997, whereas several South Pacific non‐U.S. associated Pacific nations had functional cancer registries since the 1970s. The 1998 Institute of Medicine Report, a 1998‐99 RMI Nuclear Claims Tribunal‐funded study attempting to determine the epidemiology of cancer in Micronesia^xiv, and the 2002‐03 Pacific Cancer Initiative needs assessments all confirmed major challenges with policy, reporting structures and no cancer surveillance system in place in the USAPIN. Additionally, limitations in tissue‐diagnosis of cancer (in the FSM especially) hamper accurate recording in the medical record and on the death certificates. The numbers of cases and deaths noted in the 2002‐03 assessments is generally felt to be under‐reported because of challenges with diagnosis and financing to send specimens off‐island for interpretation.

In the United States, many other surveys and standardized sources of information exist to determine prevalence of certain cancer risk‐factors like obesity, tobacco use, poor nutrition, sedentary lifestyle and others. The flag territories participate in the U.S. Behavioral Risk Factor Surveillance Survey (BRFSS) and the Youth Risk Behavior Survey, but all jurisdictions recently received supplemental funding to conduct a modified BRFSS. The World Health Organization STEPS survey methodology is used in the FAS, with modified STEPS being planned for the Flag territories. All jurisdictions receive SAMHSA and CDC Tobacco monies and collect data related to tobacco and other substance use and the FAS participate in the Global Youth Tobacco Survey.

In 2007, the University of Hawaii was awarded a CDC National Program of Cancer Registries cooperative agreement, as the bona fide agent on behalf of the six USAPI, to plan and develop the Pacific Regional Cancer Registry (PRCCR). The PRCCR funds jurisdiction cancer registry staff, training and technical assistance in each jurisdiction, including the individual FSM States and FSM National. The PRCCR Registry is housed at the University of Guam, Cancer Research Center of Guam. Most of the first three years were spent on hiring and educating new registrars in RMI, Kosrae, Pohnpei, Yap, Chuuk, FSM National, the Region; additionally training existing registrars in Palau and Guam; hiring and retraining new registrars in Guam, Chuuk, and FSM National and finally hiring a registrar for CNMI in 2010. New legislation authorizing National/Commonwealth cancer registries was enacted in RMI, FSM and CNMI by 2009. In American Samoa, additional legislation was enacted in late 2009 to allow data sharing and case reporting outside of the Territory. An inter‐jurisdiction (international) data sharing agreement was signed, with signatories from the six USAPI, the University of Guam and the Hawaii Tumor Registry.

Infrastructure was put in place, registrar offices were moved to more physically secure locations and CDC NPCR software was adapted for the USAPI. Jurisdictions (except American Samoa, CNMI and Chuuk) began reporting 2007 cancer cases to PRCCR in 2009. In the RMI, Yap and Pohnpei, it is estimated that >95% of new cancer cases are reported to PRCCR. There has been steady improvement in the quality of data and case‐capture rates in Kosrae, Palau and Guam and American Samoa. CNMI and Chuuk are catching up but 2007‐2011 case reporting remains incomplete for Chuuk and CNMI. The 2012‐2017 Regional CCC plan will continually update incident case numbers and proportional incidence by SEER Site Grouping from each jurisdiction. It is unfortunately not possible to calculate cancer mortality rates from the registry data because of major quality issues and inconsistency with death certification and registration throughout the USAPI. Jurisdiction cancer mortality reports submitted to WHO and others continue to be generated primarily from the hospital databases. Similarly, the lack of

(16)

diagnostic capacity, expense of off‐island referrals and heterogeneity in pathology lab and specialist reports make recording of accurate cancer stage data difficult. Given the small case numbers, age‐

adjusted incidence rates for some leading causes of cancer at the jurisdiction level are unstable. Age adjusted incidence rates and proportional incidence rates for the top 13 cancers in the region, as well as top 5 cancers by jurisdiction are in the figures and tables below.

Table 2 Top 13 Cancer Incidence Counts & Percent of Total for USAPI 2007‐2011

Top 13 Cancers for all USAPI #cases % rank

Breast 402 15% 1

Lung & Bronchus 371 14% 2

Prostate 266 10% 3

Colon & Rectum 224 9% 4

Liver 154 6% 5

Cervical Cancer, invasive 137 5% 6

Leukemia 123 5% 7

Uterus 122 5% 8

Thyroid 94 4% 9

Tobacco‐related Oral Cavity &

Pharynx 70 3% 10

Stomach 69 3% 11

Nasopharynx 64 2% 12

Ill‐defined & unspecified

(unknown+misc) 55 2% 13

Source: Pacific Regional Central Cancer Registry (PRCCR), 2007‐2011

(17)

Table 3 Cancer Incidence Counts and Annual Incidence Rates USAPI in comparison to HI and U.S. 2007‐2011

Incidence Rates are per 100,000 and age‐adjusted to the 2000 U.S. standard population.

Figure 2 Percent distribution of Top 13 Incident Cancers, USAPI 2007‐2011

(18)

Table 4 Ten Leading Cancer Sites by Sex & proportional distribution, USAPI per 100,000, ranked by rate adjusted to US and World Std pop (U.S. 2000 Standard Popn, World Standard Popn 2000‐2025)

Source: Pacific Regional Central Cancer Registry (PRCCR), 2007‐2011

Table 5 Ranking of Number, propor onal incidence and selected incidence‡ of invasive cancers†, by primary sites and jurisdiction – Pacific Regional Central Cancer Registry (NPCR), USAPI, 2007‐2011

Ranking of most commonly reported sites ^Cervical

cancer rank

Jurisdiction #1 #2 #3 #4 #5

AM SAMOA* Breast Uterus Colorectal Cervical,

invasive Stomach 4

FSM* Lung &

Bronchus Breast Cervical, invasive

Tobacco‐

related Oral Cavity &

Pharynx

Liver 3

GUAM Breast Lung &

Bronchus Prostate Colon &

Rectum Liver 9

RMI Cervical,

invasive

Lung &

Bronchus Breast Liver Leukemia 1 CNMI* Breast Lung &

Rectum

HPV‐

associated OC&P

5

PALAU Lung &

Bronchus Liver Prostate Colon &

Rectum Breast 6 All USAPI Total Breast Lung &

Rectum Liver 6

USAPI Incidence^‡ 402 371 266 224 154 137

(19)

‡ Only combined USAPI all cancer cases were age‐adjusted to the 2000 U.S. standard population

† Excludes basal and squamous cell carcinomas of the skin, except when these occur on the skin of genital organs, and in situ cancers, except urinary bladder

*incomplete case reporting from Am Samoa in 2009, Chuuk, CNMI

For more information on Cancer in the USAPI, please visit our website: http://pacificcancer.org, where the ‘Cancer in the US Affiliated Pacific Islands 2007 – 2011’ document is available for download.

A major emphasis of the Regional CCC and Regional registry programs is to continue to work synergistically with PIHOA, vital statisticians, medical records staff, physicians, policy makers and other stakeholders to improve the quality of vital statistics (denominator data for all conditions), to improve the consistency of medical records (content, completion, coding), to improve the timely return of off‐

island referral information to health services and other issues that greatly impact cancer and NCD reporting. Now that all registrars are in place, an annual report of incidence will be incorporated into CCC efforts in the region and jurisdiction. The PRCCR was slightly customized for the USAPI to allow recording of NCD risk factors, co‐morbidities, presence of cancer screening, immunization against Hepatitis B and HPV and betel nut use. Until that information is reliably recorded in the patient record by health care professionals, however, it will be exceedingly difficult for the registrars to enter the co‐

morbidity information accurately into the database.

Table 6 Leading Cancer Deaths by Site, pre‐2003 (from 2002‐03 NCI Pacific Cancer Initiative Cancer Needs Assessments9)

Leading cancers (mortality data)

American

Samoa CNMI Guam FSM Palau RMI

Time period 1998‐2001 1992‐2001 1995‐2001 1990‐

2003* 1998‐2002 2000‐2002

Number of deaths attributed to

cancer

152 215 790 722 38 30 65

Total Population

(2005)

65,500 80,360 168,560 114,100 19,910 61,220

RANK ORDER Male Female

1 Lung Lung Lung Lung Lung Cervix Lung

2 Liver Unknown

primary Colorectal Liver Gastric Liver Cervix

3 Prostate Breast Lymphoma

/ leukemia Oral Prostate Pharynx Liver

(20)

/ multiple myeloma

4 Stomach Colorectal Breast Prostate Liver Breast Naso/

oropharynx 5 Colon Cervical Head/Neck Cervix Pancreas Unknown Unknown

primary 6 Breast Head/Neck Unknown

primary Breast Colorectal Larynx Breast

7 Brain Stomach Prostate

*Because of tremendous issues with

data, the States’

ranking differs

Esophagus Uterine Uterine

8 Pancreas Liver Liver Pancreas

9 Rectum Lymphoma/

Leuk/Blood Stomach Prostate

10 Lymphoid

Central nervous system

Uterine Gastric

Although it is not possible to calculate mortality rates based on information in the death certificates, an indepth analysis of the PRCCR and selected individual jurisdiction cervical cancer data shows that ___

(insert info from CC slides/analysis).

Despite the challenges with obtaining accurate information, the past and current data does reveal that many of the cancer deaths are from preventable (lung, nasopharyngeal, liver, cervix) or easily detectable and potentially curable (breast, cervix, colorectal, prostate, oral) cancers. Thus, the CCC efforts at the jurisdiction and regional levels are aimed at increasing the capacity to provide effective prevention and health promotion programs, screen for cancers using proven and cost‐effective methods, develop the capacity to treat as many cancers on‐island or within the region as possible, provide improved services for cancer patients and their families and improve policies, procedures and systems so that more accurate cancer‐related information can be obtained for program planning and evaluation.

(21)

GOALS, OBJECTIVES AND STRATEGIES for the 2012‐2017 Regional CCC Plan

Vision: A Cancer‐Free Pacific

Long term Regional goals include developing a sustainable regional collaboration to oversee cancer control efforts and set minimum recommended indicators for cancer control, developing a regional cancer registry, and developing local capacity for effective CCC program planning, implementation and evaluation, developing systems of care that are culturally‐ and resource appropriate and promoting rational policies addressing the social determinants of health and health disparity and common risk factors for cancer and other NCD.

The strategies outlined in this plan are comparatively short‐term (2‐10 years) and focus on

 Continuing and expanding collaboration with regional, U.S. National and International policy makers to garner and leverage additional resources to achieve the objectives set forth in this plan and to create more sustainable systems.

 Conducting regional assessments or compendia of existing policies, done in collaboration with other regional NCD partners, with the ultimate goal of consistent, resource‐

appropriate and relevant policies that impact control of cancer and NCD

o Policies, guidelines or standards concerning social determinants of health, primary prevention, screening, surveillance and end of life care

 Conducting a comprehensive assessment of the current and future capacity for treating cancer and end‐stage NCD patients within the region and making a formal recommendation to PIHOA and other policy makers

 Development of evidence‐based curricula and training modules, which are easily adaptable to the diverse communities that exist within the USAPI

o Palliative Care and Pain Management for clinicians

o Caregiver curriculum for end‐of‐life care, utilizing both Western and traditional models of health and healing

o Program planning and evaluation

 Through the Regional Cancer Registry, continuing work on developing or enhancing existing systems that promote collection and reporting of quality cancer and related NCD data to be used to guide policy and systems change, program planning and implementation

These regional, overarching objectives and strategies complement the jurisdiction CCC plans which contain specific prevention, health promotion, screening / early detection, treatment and quality of life strategies that are community‐based, collaborative especially in health promotion and

prevention, and designed to work for their particular unique situation.

In 2007, CCPI and PIHOA agreed to recommend Minimum Regional Indicators for cancer control:

(22)

2007 USAPI Minimum Regional Indicators for Cancer Control

(prevention) By 2012, each jurisdiction will achieve completed hepatitis B vaccination series in 90% of 2 year old children

(early detection) By 2009, jurisdictions without mammography will demonstrate a 10% increase above their baseline the number of women over 50 who are offered clinical breast exams annually

(early detection) By 2012, each jurisdiction will demonstrate a 10% increase above their baseline the number of women age 18‐65 who have a cervix who are offered cervical cancer screening at least every 3 years

(early detection) By 2017, each jurisdiction will demonstrate a 10% increase above their baseline the number of women 50 and older or those at high‐risk, who are offered a mammogram annually

(early detection) By 2017, each jurisdiction will demonstrate a 10% increase above their baseline the number of men and women 50 and older who are offered a CDC‐recommended colorectal cancer screening test

(data quality) By 2010, each jurisdiction will establish a quality assurance program for tracking cancer‐related data

Regional collaboration, sharing of resources and capacity building need to continue so that all USAPI countries can meet the minimum indicators. In 2010, the Federated States of Micronesia adopted Minimum National Standards for Breast and Cervical Cancer – across the continuum of prevention to palliative care. In 2011, the RMI adopted National Screening Guidelines for screening of breast, cervical and colorectal cancers. With the advent of using visual‐inspection with acetic acid (VIA) in the FSM and RMI, the regional indicators and goals for cervical cancer screening need to be

adjusted. All jurisdictions have implemented the HPV vaccination program, with varying degrees of success. The indicators were discussed at the May 2011 CCPI meeting, Regional Goals, Objectives and Strategies were further refined and discussed at the November 2011 CCPI meeting and the November 2011 PIHOA meeting.

Implementation of the Regional CCC plan involves collaboration with other regional affiliate organizations of PIHOA as the region moves to improve basic public health infrastructure, which includes capacity in different areas that impact control of NCDs including cancer. Effective

collaboration, shared vision, an agreed upon structure for decision‐making, representative / equal voting, informed decision making, shared decision making, open communication, and clearly defined roles and responsibilities are significant operating principles established and utilized by the CCPI to properly address cancer and NCDs. In 2011, the CCPI working collaboratively with other Pacific NCD partners established five (5) main goals of the 2012‐2017 Regional CCC Plan:

Goal: Reduce the burden of preventable NCDs, including preventable cancers

Goal: Detect cancer, other NCDs, and shared risk factors in individuals as early as technically possible within USAPI

Goal: Improve the capacity to treat cancer and other NCDs effectively within the USAPI region Goal: Provide adequate supportive care services for people and families with cancer and end‐

(23)

stage NCD

Goal: Improve evaluation systems in order to demonstrate efficacy of CCC programs doing collaborative work

Objectives and strategies were prioritized for implementation in 2012‐2017 and were approved in November 2011 by the CCPI. The revised draft plan (missing the 2007‐2011 cancer data) was approved May 2012 CCPI meeting. At the March 2014 CCPI meeting, based upon revised data and changing regional partnerships and priorities, the CCPI made additional recommendations to change or remove some of the strategies below.

USAPI Pacific Regional Comprehensive Cancer Control Plan 2012‐2017

PREVENTION GOAL: REDUCE THE BURDEN OF PREVENTABLE NCDs, INCLUDING PREVENTABLE CANCERS.

Within the USAPI, culturally appropriate primary prevention remains a cost effective and

sustainable method to control cancer and other NCDs. Further upstream are primordial factors associated the social production of cancer and NCDs. These factors include the social determinants of health (education, poverty, food security) and inequity. The 2012 – 2017 Regional Plan will focus on preventing cancer through more coordinated primary prevention interventions and through working with the social determinant of health and disparity.

The 2012‐2017 plan states a prevention goal, to reduce the burden of preventable cancers and NCDs. Three prevention based objectives will move the USAPI towards that goal: 1) working

integrally with a NCD regional collaborative, 2) educating health workers, the community and policy makers about socio‐ecological models and disparity as it affects CA and NCDs, and 3) leveraging resources for primary prevention for the jurisdictions and region.

The first objective, relating to working integrally with NCD partners, will lend synergy to the development for common evidence based messaging across risk factors and resources. Shared Cancer and NCD risk factors are approached in multiple ways by different programs. A

compendium of exiting approaches and messaging will begin the process. Similar interventions and consistent messages that are evidence‐based decreases community confusion and facilitates common understanding. NCD partners for this objective include the regional tobacco, chronic disease and diabetes, maternal child health, nutrition and behavioral health / substance abuse

(24)

programs and coalitions.

The second objective speaks to collaboratively developing effective policies and other system changes so that decreases in risk behaviors can be measured and tracked.

The third objective will lead to the development and dissemination of relevant, culturally‐ and education level‐ tailored information, about the socio‐ecological model of health and health disparities. The content will serve as a basis for a dialogue to affect social change that may have much larger impacts on controlling cancer and NCDs as compared to primary prevention.

Regional Project Period Objective 2: By 2017, increase the number of regional NCD partners engaged with CCPI in prevention‐related discussions and activities that impact the Regional CCC plan

Annual Objective 2.1: By December 2014, increase the number of collaborative relationships with regional NCD coalitions, programs and other partners to develop common messages around four major risk factors.

Strategy: Foster collaboration with regional NCD partners relevant to prevention

Major activities: Include relevant NCD partners in at least four prevention

workgroup meetings per year; CCPI participation in Regional NCD Council meetings;

Execute MOA with key regional partners

Regional Project Period Objective 3: By 2017, begin to demonstrate an at least 2% decrease from baseline percent of the general population engaging in certain behaviors which puts them at risk for developing cancer and NCD

Annual Objective 3.1: By June 2016, increase the number by one each of effective

prevention policies which are amended or developed to target four major NCD risk factors in the region

Strategy: Strengthen policy planning, development, and adoption across the USAPI Jurisdictions

Major activities: Collaborate with NCD programs and other partners to review existing policies related to prevention of NCD (tobacco, physical activity,

nutrition/food security, obesity, environment, poverty reduction); Collaboratively amend and/or develop new policies for prevention targeting four major NCD risk factors; Work collaboratively with partners to monitor the impact of those policies

AO 3.1 will be deleted. The University of Hawaii was contracted by PIHOA to compile a toolkit of policy examples and key background information, fact sheets and powerpoint templates for CBO, public health agencies (including CCC), legislators and Executive Branch to supplement information in the WHO Best Buys

(25)

and NCD PEN. Pacific Cancer Programs staff and student volunteers culled through thousands of webpages to find the most relevant and/or adaptable to the USAPI. Topic areas included tobacco, alcohol, nutrition, physical activity, built environment, health in all policies, policy 101, community engagement. For an example, see http://www.pihoa.org/initiatives The PIHOA webmaster is the process of putting the material on the web.

CCPI members gave feedback at various points during the project and the module on policy 101 and related resources were demonstrated and discussed at the October 2013 CCPI meeting. PIHOA, UH and others will undergo an iterative feedback process in build up to the NCD Leadership Forum which is proposed by PIHOA for later in 2014. As part of the development process, jurisdictions shared (if comfortable) examples of their success stories / policy examples. Envisioned for the Toolkit website are links to additional resources / examples / success stories / source documents / more in depth how-to guides for various topics areas.

Regional Project Period Objective 4: Through 2017, increase the number of policies and programs specifically addressing the social determinants of health (SDH) as they relate to cancer and NCD

Annual Objective 4.1: Through 2017, increase the number from 0 to 3 of culturally and educationally tailored information presented to diverse stakeholders and decision‐makers who impact cancer and NCD control

Strategy: Develop and disseminate adaptable models, curricula and tools

Major activities: Adapt SEM/SDH model and framework for the USAPI; Create a compendium of existing laws or policies addressing SDH; Conduct gaps analysis;

Develop and disseminate an adaptable curriculum or toolkit on SDH for delivery in at least three major sectors in each jurisdiction

SCREENING/EARLY DETECTION GOAL: DETECT CANCER, OTHER NCDs AND SHARED RISK FACTORS IN INDIVIDUALS AS EARLY AS TECHNICALLY POSSIBLE WITHIN USAPI.

Secondary prevention of cancer and other NCDs through screening and early detection increases longevity and enhances quality of life. The 2007‐2012 regional plan focused on the regional capacity for cervical cancer screening through support for pathology / cytology training, and augmentation of laboratory infrastructure. The prior RCCC plan also articulated developing health workforce development, quality assurance and continuing quality initiatives to maximize health workforce productivity, efficiency, and standards—with a focus on laboratory and screening efforts. A regional central laboratory was also proposed.

(26)

Early in 2007‐2008 it was determined that utilization of pap smear technology was not feasible in several of the USAPI jurisdictions. Other cervical cancer screening technologies were subsequently evaluated. Visual inspection with acetic acid (VIA) was implemented in the FSM and RMI, where pap smear technology was not sustainable or even possible in the remote areas. Cervical cancer screening and breast cancer screening were enhanced through the development of minimum standards for cancer screening in the FSM and RMI, where no CDC‐funded Breast and Cervical Cancer Early Detection Programs exist. Cervical cancer screening awareness programs were promoted in all jurisdictions to increase community penetration of screening.

Health workforce development and quality assurance initiatives were provided throughout the region’s laboratories and hospitals via a partnership with PIHOA, the local health ministries, and the community colleges from 2009‐2012. The regional laboratory discussion is ongoing and is led by PIHOA.

The 2012‐2017 Pacific regional cancer control screening / early detection goal is expanded to include screening for NCDs and screening for common NCD risk factors. The 2012 ‐2017 regional plan will further develop regional standards for cancer and NCD screening based on the success of the 2007‐2012 standards for screening in several jurisdictions. Creating efficient processes is an implied part of standards development. In 2008‐2011, clinical staff in all areas reiterated the need for real‐time access to data – at the point of care – so that the clinician could be aware of important co‐morbidities and rectify deficiencies in health maintenance education, measurement or testing.

The Pacific Chronic Disease Coalition (PCDC) has been working since 2010 to adopt the Chronic Disease Evaluation Management Systems for all diabetes programs in the region. The CCPI has endorsed this effort (exploration of a common clinical / point‐of‐care tracking system) and will encourage further exploration of existing processes and health information systems so that implementation efforts are systematic and appropriately resourced.

During the 2007‐2012 period, it was found that faith based communities had a powerful effect on social mobilization for health promotion, cancer prevention and tobacco cessation in Kosrae and Pohnpei. Adapting the successful faith‐based strategies to screening throughout the region through systematic engagement of faith‐based communities will be fostered.

Key collaborators for this goal area include core working groups with diverse representation of public health program managers or data specialists, clinicians, cancer registrars, vital statisticians and close coordination with PIHOA Quality/Performance Improvement Managers and Health Information System improvement efforts as those evolve.

Regional Project Period Objective 5: Through 2017, increase by at least three, the number of collaboratively implemented minimum regional guidelines to expand or enhance screening and early detection for cancer, NCD and shared risk factors.

(27)

Annual Objective 5.1: By the end of December 2015, conduct an assessment of screening standards and guidelines to support cancer and NCD screening across the region.

Strategy: Conduct an assessment of screening standards & guidelines to support cancer and chronic diseases screening across the region

Major activities: Convene a meeting of all major stakeholders to identify and

prioritize common surveillance needs; Develop simple assessment tool to determine current screening practices, indicators and guidelines; Conduct assessment; analyze and disseminate report to stakeholders

Regional Project Period Objective 6: Through 2017, regionally showcase best practices and model programs which are designed to increase access to cancer and related screening services and to reduce health disparities.

Annual Objective 6.1: By the end of June 2013 and annually thereafter, increase by at least one, the number of descriptions of best practices in cancer and NCD screening services posted on pacificcancer.org or pihoa.org website(s)

Strategy: Facilitate adoption of best practices in screening for cancer and NCD

Major activities: In coordination with NCD partners, develop a reporting template and process to determine best practices; Sponsor an annual call for nominations of best practices and model programs to improve access to NCDs and cancer screening services;

Dissemination via website and email blasts

Regional Project Period Objective 7: By June 2017, mobilize at least one faith‐based network in the region to assist with improving access to screening for cancer, NCD and shared risk factors and to reduce health disparities

Annual Objective 7.1: By June 2014, increase to at least one the number of formal

relationships with faith‐based networks across the region to address the screening of cancer and shared risk factors for NCD via the church community.

Strategy: Develop faith‐based regional partnerships

Major activities: In collaborative settings, discuss the process needed to

systematically engage faith‐based organizations at a regional level; Identify existing faith‐based networks in the USAPI; Develop formal relationships

AO 7.1 was deleted from the tasks list based on the decision of the CCPI during their semi-annual meeting in March 2014, Guam. No regional faith-based network exists, that we could co-operate with, and the HLC has currently has limited functionality, so our program doesn’t have the means to reach this Objective.

PACIFIC REGIONAL COMPREHENSIVE CANCER CONTROL PLAN 2012‐2017

U.S. Affiliated Pacific Island Nations

American Samoa – CNMI – Guam – Palau – RMI ‐ FSM